Lichen sclerosus diagnosed 6 months ago

Help ladies, I don't know what to do I'm in agony. So sore I don't know whether to use steroid cream so frightened.not used it for 2 days. Can't even get out as walking is painful.

Sorry to hear that.  Have you looked closely at your Vjay, sorry to ask such personal questions, but can you identify exactly where the pain is? I know you said you had a lot going on, but is it coming from a large area, or a cut or a sore, as sores can be agony, have you been able to pinpoint the area.  Are you bathing in salt water or bic of soda water?  Remember that it has only been two days without using the cream, and unfortunately, because we all react differently it could take some time to discover what works for you.   Remember even if you are doing everything you can to control this problem, if you are still eating foods with sugar it wont ease up, get better, it could be that you are still reacting to an overload of sugar in your system, remember sugar is in carbohydrates too, and for someone like yourself in such distress, you have to eliminate everything at this point.  Only through my own experience have I been able to state with certainty that sugar is the root of the problem for lichen Sclerosus sufferers.

Hi guppy

The pain is in the greases looks like blisters, round red area on my vulva. Whatever I put on irritates. Went to doctors yesterday he didn't even look just went by what I said. Going again tomorrow to see another doctor. I just can't believe this day and age there's not more that can be done. I will certainly cut out sugar, I've already cut out gluten .thanks for all the advice .would be good to have support groups where you live.

It is possible you might even have something else going on as well, so it is a good move to see another doctor, as I have not had anything that resembles blisters myself, everything but that.  Let us know how you get on.   Make sure you write down everything before seeing him, then you can show him the list of problems.

Thanks Guppy I will.

Let us know what the doctor says.

Lorraine, I have lesions and blisters too. I was diagnosed with Lichen Sclerosis after two biopsies, but after eight months I was seen by a vulval specialist in dermatologist and she has given me a new diagnosis of Lichen Planus. The treatment is pretty much the same but the ointments and creams do burn the raw  lesions quite a bit. I presume you have looked up all the signs and symptoms of LS and you are typical? Might pay you to research LP too. They are similar in some ways but totally not in others.

In the meantime, keep up the baths, try some suggested creams etc.

another thing that might be going on is Candida! I never had it much before but now I get it often and it really hurts! I take an oral tablet once a month now to keep it at bay. 

Sorry for your pain and fear! It happened maybe still happens to us all, it's hard to deal with and I hope you have someone to talk to in real life about it! Be very choosy who you tell, that's my advice. I only told my sister and daughter as they are never going to gossip and tell the world. Of course, husband, poor sod!

It's such an irony that more publicity needs to be around this issue for funding and studies but who wants to front up and be the face of a vulval disease! Wish I was brave enough to write my story, be interviewed, etc but feel anyone who knew me would only then  'see' me as my condition. 

Ginny someone beginning with Ch did write a book on how she beat it. I am waiting for the library to come up with a copy. 

Lynne,i just wanted to say i have vaginal atrophy and it doesnt bother me in the least to tell anyone,LS isnt something to be embarrassed about. Almost everyone has something wrong with them ,dont feel like its something that you cant talk about .

Lee, I do see what you're saying and I agree, everyone has something. But it's just so very private to me, maybe it because I am old-ish. Just can't get my head around telling someone the reason I can't go to dinner or sit around for hours chatting (can't sit, can't drink, boring!)  I just don't want people to know about something so personal but that's just me. Not embarrassing, just never something I would talk about.

I use the excuse that my IBS is playing up when I have to refuse social invitations. 😏

 

My doctor will only prescibes ointments as creams usually contain alcohol. I myself so far,can only use an ointment base.

I beleve coconut oil is also anti fungel

I've been using the cream twice a day for nearly six months, I am very Red and sore which seams to spreading down my legs. The white plaques have also got worst. Been to see a doctor over Christmas he just said to keep using the cream, but it does worry me so much it can't do your skin much good. Does soaking in a salt bath irritate the condition? .

Yeah, twice a day for six months was bad advice. Guppy, I don't think she should go cold turkey from that sort of dose, there could be a blowback flareup. But twice a week would be wise. Or as your doctor to try you on tacrolimus, that's what I have been on for a year now.

That said, six months is not usually long enough to expect major improvement, so what you're experiencing may just be a prolonged flareup. If you haven't tried cutting out the big hits of sugar – that's an easy fix that often works very fast. Sugar is like throwing gasoline on the flames of an LS flare.

That is too long in my opinion.  

Most women start off twice a day for a month or so, and then eventually switch to only twice a week.  In your shoes, I would stop the cream immediately at this point.  It is clearly not working for you, and neither is your doctor.  I would try to find a Vulva Clinic in your area, as they will have seen LS before and have experience with it. Unfortunately, many professionals are clueless, which is why you need to find someone who understands LS.  It may be that you need the ointment rather than the cream. For now, I would simply bathe twice a day, and try not to put anything on there until you can see someone that knows what they are doing.  I have sometimes used a tiny bit of vaseline if my Vjay is a bit sore, and I haven't wanted to use the steroid cream.  Salt water baths have always soothed me, and so it is worth giving it a try.  

I hear ya, but I don't think what she is doing is doing her any good, she is getting worse.   Really she needs to see a doctor asap, as you say she may need a different cream. I honestly believe that if you are seeing no progress, and that  things are getting worse, then you need to review and change things,  If she can see a doctor asap thats the best plan really. 

Im sure you arent suppose to use it twice a day for that long..here is where google can really be a friend.

Sounds like she is haveing a flare up from excessive steroid use

You may be right. I guess it's not surprising. It does take off the top layer of crappy LS skin, but if you overdo it, it just keeps burning skin off.